I guess I'll be taking a statin

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WhatNext
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Re: I guess I'll be taking a statin

Postby WhatNext » Mon Jul 08, 2019 4:11 pm

floramaria wrote:Hi WhatNext, what gene is it that is related to reduced activity of melatonin receptors? Are you taking supplemental melatonin?
I ask because, like you, I am focused on improving my sleep, which seems to be the weak link in my health chain.
Thanks!


Hi Floramaria,

The gene is rs12506228; the bad allele is A. The result was in a "FoundMyFitness" report. From the ad for FMF I thought it would tell me what supplements would be best for me but that wasn't what it turned out to be at all.

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Re: I guess I'll be taking a statin

Postby WhatNext » Wed Sep 11, 2019 8:50 am

I had a follow-up appt with my GP yesterday, having been on Zetia for two months. He’d ordered a follow-up cholesterol test and at the same time I had a test for apolipoproteins B and A-1, which I’d bought on Walk-in-Lab. I’d read that the ratio of those two numbers is a better indicator of risk of CVD than LDL cholesterol. My ApoB was “borderline high” at 94: the desirable range is below 90. But my ApoA1 was also high and the ratio was .5, which is lower than the average risk for a woman, which is .6.

I was thinking ApoB correlated with LDL cholesterol and I expected my LDL to still be over 100 -- those results were just sent to the doctor’s office. I figured the doctor would want me to either increase the dose of Zetia or switch to a statin. I’d brought quite a bit of information with me to bolster my case for worrying more about my brain than my heart and not wanting to take a statin, which can interfere with sleep (that would be the side-effect I’d have, if any). I’d decided to tell him I was APOE3/4 and I’d brought a screen-clip of my Promethease report. I’d also brought a few paragraphs from the FoundMyFitness report regarding the reduced activity in the melatonin receptors. I’d also printed the Scandinavian study that found that people my age with no history of diabetes or heart disease did better with higher cholesterol. I’d entered my numbers from the previous visit into a Framingham Heart Risk test and found I have a 1.6% risk of having a heart attack during the next ten years.

As it turned out my LDL cholesterol had dropped from 121 to 88 and he was happy: he said “The Zetia is working.” My HDL was 89: VLDL was 10, TC 187. So the decision I had to make was whether to just keep taking it or try to convince him I didn’t need to worry about cholesterol. I showed him everything I’d brought and he said “I can understand why you’re confused.” I didn’t want him to think I was confused: I wanted him to think I was well-informed. He left it up to me to decide whether to stay on the Zetia or not. I told him the only way I could be sure I have no history of heart disease would be to have a coronary artery calcium scan, but he said the trouble with the scan is that you can’t tell if the calcium is on the interior of the artery or on the outside. He said the only way to know is to have a cardiac catheterization which he would “strongly advise against.” There’s no way I’d do that: it’s an invasive procedure.

So, taking my APOE3/4 status into account and not knowing how that would confound the Scandinavian mortality results, taking my father’s history of quintuple-bypass surgery into account, and the fact that I haven’t always eaten healthy food and I haven’t always exercised, and just not wanting to try to argue with him, which is impossible, I decided to stay on the Zetia. I said “Now I can start eating eggs again: eggs contain choline, which is good for the brain” to which he responded “Too much information.”

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Re: I guess I'll be taking a statin

Postby Fiver » Wed Sep 11, 2019 10:01 am

Don't worry too much about whether or not anyone "is confused" about blood cholesterol and lipids. I know highly trained cardiologists and lipodemiologists who admit that *no one* understands this. We're all trying to make the best possible choices with incomplete information. It seems like you're making good choices for you.

About the calcium score - yes, it is imperfect. However, it is not invasive nor expensive. And if your score is low (or zero) you don't have to worry about whether the calcium is on the inside or outside.
Four relatives with AD. Concerned, but hopeful. Introverted, but will talk about science. Kinda into microgreens. First in line for gene-editing trial, despite risks.

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Re: I guess I'll be taking a statin

Postby DanH44 » Sat Sep 14, 2019 3:02 pm

WhatNext wrote:I had a follow-up appt with my GP yesterday, having been on Zetia for two months. He’d ordered a follow-up cholesterol test and at the same time I had a test for apolipoproteins B and A-1, which I’d bought on Walk-in-Lab. I’d read that the ratio of those two numbers is a better indicator of risk of CVD than LDL cholesterol. My ApoB was “borderline high” at 94: the desirable range is below 90. But my ApoA1 was also high and the ratio was .5, which is lower than the average risk for a woman, which is .6.

I was thinking ApoB correlated with LDL cholesterol and I expected my LDL to still be over 100 -- those results were just sent to the doctor’s office. I figured the doctor would want me to either increase the dose of Zetia or switch to a statin. I’d brought quite a bit of information with me to bolster my case for worrying more about my brain than my heart and not wanting to take a statin, which can interfere with sleep (that would be the side-effect I’d have, if any). I’d decided to tell him I was APOE3/4 and I’d brought a screen-clip of my Promethease report. I’d also brought a few paragraphs from the FoundMyFitness report regarding the reduced activity in the melatonin receptors. I’d also printed the Scandinavian study that found that people my age with no history of diabetes or heart disease did better with higher cholesterol. I’d entered my numbers from the previous visit into a Framingham Heart Risk test and found I have a 1.6% risk of having a heart attack during the next ten years.

As it turned out my LDL cholesterol had dropped from 121 to 88 and he was happy: he said “The Zetia is working.” My HDL was 89: VLDL was 10, TC 187. So the decision I had to make was whether to just keep taking it or try to convince him I didn’t need to worry about cholesterol. I showed him everything I’d brought and he said “I can understand why you’re confused.” I didn’t want him to think I was confused: I wanted him to think I was well-informed. He left it up to me to decide whether to stay on the Zetia or not. I told him the only way I could be sure I have no history of heart disease would be to have a coronary artery calcium scan, but he said the trouble with the scan is that you can’t tell if the calcium is on the interior of the artery or on the outside. He said the only way to know is to have a cardiac catheterization which he would “strongly advise against.” There’s no way I’d do that: it’s an invasive procedure.

So, taking my APOE3/4 status into account and not knowing how that would confound the Scandinavian mortality results, taking my father’s history of quintuple-bypass surgery into account, and the fact that I haven’t always eaten healthy food and I haven’t always exercised, and just not wanting to try to argue with him, which is impossible, I decided to stay on the Zetia. I said “Now I can start eating eggs again: eggs contain choline, which is good for the brain” to which he responded “Too much information.”


I agree with what fiver just said re the calcium score. Yes, you've made bad choices in the past and the CAC test will let you know how consequential those mistakes have been.

But, please take into consideration that for an over 65 woman, with only borderlijne high apoB, there is absolutely no data showing better outcomes for cholesterol lowering. There may instead be data that higher cholesterol might be a little better. Look at this 2019 study of 12 million people (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6367420/):
Image
According to that, the cholesterol sweet spot at your age is closing in on 230. Your cholesterol looks just fine to me -- without any Zetia.

But not only is the best cholesterol level for not dying controversial, you have below ave risk considering apoA, apoB. And your 10-year Framingham risk is only 1.6%. I think your doctor is at worst, borderline malpractice, and at best, just simply wrong. To top it off, his dismissive TMI response to you was completely uncalled for. In your shoes, I would get another GP.
Dan
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Re: I guess I'll be taking a statin

Postby WhatNext » Sun Sep 15, 2019 5:22 am

DanH44 wrote:I agree with what fiver just said re the calcium score. Yes, you've made bad choices in the past and the CAC test will let you know how consequential those mistakes have been.

But, please take into consideration that for an over 65 woman, with only borderlijne high apoB, there is absolutely no data showing better outcomes for cholesterol lowering. There may instead be data that higher cholesterol might be a little better. Look at this 2019 study of 12 million people (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6367420/):
Image
According to that, the cholesterol sweet spot at your age is closing in on 230. Your cholesterol looks just fine to me -- without any Zetia.



Hi Dan,

Wow this is very good information--I wish I'd found this before going in to see him! My TC before going on the Zetia was 224: pretty close to the sweet spot on this chart. But at 187 it's not far from it actually. I've been thinking if I keep taking the Zetia I can start eating more eggs again. I've also been depriving myself of cheese. I try to avoid cow's milk cheese made here in the US but I love goat's milk cheese. Sheep's milk cheese is my favorite but it's hard to find--sometimes they have it at Whole Foods.

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Re: I guess I'll be taking a statin

Postby WhatNext » Sun Sep 15, 2019 5:45 am

Stavia wrote:Whatnext: I personally do not prescribe statins in a woman who has not had a previous heart attack but with a slightly high TC without evidence such as a coronary calcium scan or angiogram.


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Thanks Stavia, I missed seeing this response earlier. My doctor keeps telling me he takes a statin himself, which isn't at all comforting. I've been going to him for so long -- 30 years -- and for most of that time I haven't had any reason to be unhappy, although there were two times when he was wrong. I took my son to him and he mis-diagnosed a skin problem as "blocked sweat glands". My son was in high school at the time. It got worse and I took him to a dermatologist who knew immediately what it was and with treatment it went away. I can't remember what it was but it was NOT blocked sweat glands.

When I hit menopause I had horrible hot flashes. My heart would pound so hard that I could feel my pulse in my toes and the tips of my fingers. Sweat poured off me. I slept for an hour and 40 minutes at a time, waking up and breaking out in a sweat every two hours, taking 20 minutes to fall asleep again. My sheets never dried out during the night; my clothes never dried out during the day.

I knew that my interior arteries were contracting to force the blood to the surface. I had allergies in the spring and suffered from nasal congestion but during a hot flash my nasal passages would open up completely and I knew the vessels inside them were contracting too. I used to wonder if it was possible to die of a hot flash--no kidding.

When I told my GP about the hot flashes he said the only negative thing that might happen is that my blood pressure might drop because the vessels near the skin were opening up to allow the blood to reach the surface. That was NOT what was happening.
Oddly, during that time my gyn didn't recommend HRT; it was about 15 years ago and I know it's gotten better now--that may have been a time when the risk of breast cancer was coming to light.

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Re: I guess I'll be taking a statin

Postby Stavia » Sun Sep 15, 2019 6:24 am

Whatnext, there are a whole lot of subtext things going on here for you that I can see. Its a really complicated situation you are in.

The USA medical milieu is obsessed with lipids, which makes the lay population obsessed too. I see it over and over again in the forum posts. It is a thing specific to the USA and seen much less in other cultures. You would not have been extremely unlikely to offered a statin in other cultures because of your low overall risk score, and absolutely no way ezetimibe either. USA is the only culture that treats to TC levels alone. Everyone else looks at a total CVD risk calculation which considers HDL, BP, HbA1C etc etc etc. Your doctor is just plain wrong when judged by the standards outside the USA. But he is completely appropriate when judged by the standards inside the USA. By you rejecting his advice you are rejecting the whole USA cholesterol-treating structure in its entirity.

You sound a bit disempowered in your relationship with your doctor, but obviously 30 yrs is a precious thing and not to be lightly discarded.

From a doctors point of view, a patient bringing printed sheets and challenging his/her point of view is extremely unlikely to have a positive outcome. Especially an older, experienced doctor. But most importantly if it is contrary to current guidelines he will never change his opinion to refelect what is outside the USA guidelines because a layperson brings him information. I'm going to be brutally honest now - I'm pretty open minded, but TBH I internally roll my eyes when patients bring stuff like this. Because honestly they get the context completely wrong 99.99% of the time. So I'm pretty sure I miss the 0.01% time when they are right...

I have no easy solution for you.
I guess you have to consider how to manage your relationship with him. Cos you aint gonna change his mind with regard to his management of lipids in general.



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Re: I guess I'll be taking a statin

Postby MagicBean » Sun Sep 15, 2019 6:47 am

WhatNext wrote:
The gene is rs12506228; the bad allele is A. The result was in a "FoundMyFitness" report. From the ad for FMF I thought it would tell me what supplements would be best for me but that wasn't what it turned out to be at all.


WhatNext, I have the same rs12506228 A/A gene (on top of ApoE4/4 and having sleep apnea (currently untreated)). :shock: I don't know if taking melatonin would help us, since there are fewer receptors to collect it. I have done some looking around to see if there's anything that can mitigate this issue but haven't found much.

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Re: I guess I'll be taking a statin

Postby WhatNext » Sun Sep 15, 2019 7:33 am

MagicBean wrote:
WhatNext, I have the same rs12506228 A/A gene (on top of ApoE4/4 and having sleep apnea (currently untreated)). :shock: I don't know if taking melatonin would help us, since there are fewer receptors to collect it. I have done some looking around to see if there's anything that can mitigate this issue but haven't found much.


Hi MagicBean,
I'm hoping that the reason for the bad outcome quoted in the study is not because this gene prevents sufficient sleep but because people with this gene don't think they need much sleep. As Matthew Walker writes in "Why We Sleep", melatonin doesn't put you to sleep, it just tells your brain it's time to sleep, related to the circadian rhythm. But people in Alaska don't sleep 24 hours a day in winter and they don't stay awake 24 hours a day during the summer so it's possible to sleep contrary to the circadian rhythm. That's what I'm HOPING is true.

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Re: I guess I'll be taking a statin

Postby KatieS » Sun Sep 15, 2019 8:07 am

MagicBean wrote:
WhatNext wrote:
The gene is rs12506228; the bad allele is A. The result was in a "FoundMyFitness" report. From the ad for FMF I thought it would tell me what supplements would be best for me but that wasn't what it turned out to be at all.


WhatNext, I have the same rs12506228 A/A gene (on top of ApoE4/4 and having sleep apnea (currently untreated)). :shock: I don't know if taking melatonin would help us, since there are fewer receptors to collect it. I have done some looking around to see if there's anything that can mitigate this issue but haven't found much.

If you have any questions to facilitate treatment of sleep apnea, please PM me. Sleep apnea, particularly if associated with oxygen desaturations, damages the brain and the cardiovascular system.


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